Advocacy needed to improve care
In the aftermath of the Supreme Court ruling to allow states to ban assisted suicide, institutional ethics committee members and local/regional bioethics networks are urged to focus on improving care, educating the community, and changing public policy to better serve dying patients. Experts recommend the following actions:
1. Discuss the topic of improved care of the dying openly and continuously in your ethics committee meetings.
2. Make sure that each member of the committee spends time with terminally ill patients and their families. Become knowledgeable of the patients’ clinical experiences, urges Ira M. Byock, MD, president of the Gainesville, FL-based American Academy of Hospice and Palliative Medicine.
3. Develop guidelines for palliative care practice in your institution. Consider the creation of a supportive or comfort care team of caregivers, recommends Susan W. Tolle, MD, director of the Center for Ethics in Healthcare at Oregon Health Sciences University in Portland.
4. Develop institutional policies on pain management. At Oregon Health Sciences University, the comfort care team has devised a policy that outlines specifically how pain medications will be titrated for the terminally ill patient. (The next issue of Medical Ethics Advisor will feature a story on that policy.)
Pain management policies send a powerful message to physicians who may be reluctant to administer pain medication for fear of legal risk, says Lawrence J. Nelson, PhD, an ethics committee member at Summit Medical Center in Oakland, CA, and professor of philosophy at Santa Clara (CA) University.
"I was heartened that several of the opinions [of Supreme Court justices] affirm what many of us have argued for a long time to be the law: A patient with pain symptoms may receive whatever dose of narcotics or other drugs is necessary [medically indicated and properly titrated] to alleviate that pain without the physician running afoul of the criminal law," Nelson says. "I hope physicians, professional medical associations, and state medical boards take this to heart and get the word out there."
Alan Meisel, JD, author of The Right to Die and director of the University of Pittsburgh Center for Medical Ethics, says, "Committee members must stress to their physicians that unintended death from adequate use of analgesics does not subject them to prosecution. What is critical is not the means by which death is hastened, but whether there are adequate safeguards to prevent abuse."
Nelson urges ethics committees to further educate their medical and nursing staff on these important distinctions about pain medication.
"You cannot just assume that doctors will read these [Supreme Court] opinions and immediately feel more comfortable" titrating pain medications, he says. "Stay on this issue, aggressively educate, assist, and support your physicians to do the right thing by patients."
5. Develop a resource book of persons, organizations, publications, and other resources on end-of-life care. In Oregon, Tolle works on a task force that recently published a 54-page resource book and distributed it to all physicians statewide. The book can be ordered for $6 by contacting the Oregon Health Sciences University Center for Ethics in Healthcare. (See contact listing for Susan Tolle, p. 86.)
6. Educate local judges and other legal officials about pain management. "Take the initiative in trying to educate district attorneys, coroners, medical examiners, and judges," Meisel says.
Work through your local medical society and/or regional bioethics network to sponsor a forum for legal professionals on pain management for terminally ill patients, he urges.
7. Advocate for policies encouraging comfort care of the dying in your state. In many states, hospice care is limited to patients with private insurance. In Oregon, where the Oregon Health Plan pays for hospice care, only 2% of the population is uncovered. Tolle and her group worked for 18 months with legislators to pass a universal access to hospice bill, House Bill 2700; it died at the end of the last legislative session in July.
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